SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Back from my appointment
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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Back from my appointment

Hi Everyone,

Well, I am back from my appt.

I told him I was feeling better but I still had numbness and tingling but it is less frequent  than last time I saw him and is more of a come and go basis....
My nuero said thre was no change on my MRI from last one done in June 2009
I asked if he thought this was MS and he said no but it will be a wait and see kind of thing and we need to continue to track my sensory symptoms ..He said he wanted to see me in 2 months and start weening me off my migraine meds to see if there is a corralation between the 2...

I don't know if this still leaves me in limbo..

JibJen
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27 Comments
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Sorry,

That was a stupid comment..

I am still in limbo...I'm guessing with no change in MRI.. MS must be unlikely..I am guessing he is back to migraine theory of being culprit???although he did not say that..maybe he is ruling it out......He has not ordered blood work or anything and never mentioned anything about MRI of spine  (which I forgot to ask about) I have actually have not had any migraines since I last saw him in over a month if not longer..well, here we go again...confused....

JibJen
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There's no such thing as supid comments... only stupid neuro's. Just kidding (sort of). I seem to recall getting the impresion your neuro was quite helpful, or am I dreaming?
I think him wanting to see you in just 2 months is a good thing. And weening off any med's has to be good too, doesn't it?

I wish I had answers for you, I'm so sorry you're feeling confused again. Just know  I'm among those routing for you. I think you should phone in and ask the questions you are asking here. Is it migraine's? What about the spine MRI? Just my suggestion.

Good luck    Mike
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oh....and stupid speller's (supid???) lol
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hi there, jenny,

i was hoping you would have some clarity today.  i am sorry things are still so confused for you after this appointment, but hearing that the doc doesn't think it's MS might feel like a relief in some way??

i hope you're doing okay.

best wishes,
xo
binx
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Thanks guys,

It is a releif in someway but I guess in some way MS was at least an answer to my symptoms (if that makes sense) I still have my symptoms of numbness and tingling (more the tingling) but I do feel better compared to a few months ago.. I guess I was shocked that it went to having at least an answer of some sort to no answer again.....I think I may need to get past the fact that even though I have lesions does not mean something is wrong..I guess....or that it does not mean automatically MS..which I new..I just don't want my symptoms to be dismissed which right now he is not doing so that is good.

I guess I feel like I took a step backwards a bit..He was kind today and still wants to track my symptoms..at least he isn't dumping me and saying I'm an idiot..He may have a plan...as I have said in the past he is not a total sharer of everything he is thinking, but said it will be a wait and see kind of thing...

I guess my job for the next 2 mnths will be to track carefully my symptoms to the T for him..

Thanks guys.again ..for being here
JibJen
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Poor you, jibjen. Almost like you're back on the merry-go-round again. Except that there's nothing merry about our Limboland 'Funfair'!

I guess there are some plus points but you still haven't got a treatable label, so to speak. Personally, I prefer not to take meds speculatively, so coming off the migraine meds *might* rule in or rule out some things. Problem is that quite a number of migraine meds are used for other conditions too. Several years back when they tried to convince me I had migraine they gave me an old drug that is sold in India for weight gain only! (And everywhere else as a sleep aid for bodybuilders who are hyped on steroids!!)

Good luck with symptom tracking - it could be very revealing.

samx
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Hi jen well at least he is seeing you again and SO SOON too. We usually get seen about every six months.

It is a good idea to keep a track of your symptoms and why they are occurring.

Sometimes I wonder does anyone get an answer when they see their Nuerologist LOL. I am beginning to believe its a FABLE lol.xxx
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Hi Maria,

Good point. 2 months is pretty soon.. i will keep track of things to the T.. I have a question for you..or anyone..have you ever thought to go to a different doc outside of nuerologist for a symptom or wit it out..I was thinking since he has confirmed no ms but I still have my symptoms of numbness and tingling is this something i need to see a different doc for or does that to be asked at my next appt.?? again something that I didn't think of until 2 am this morning as I was lying in bed..he  did say that this will be a wait and see kind of thing...just a thought....

I can not imagine what I will be like when he takes me off my meds..hmmmmm

I think answers from neurologist if a fiction...;o)

Have a nice day all
Jibjen
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Hi Jen I would ask your neuro what NEXT?

The thing is though Jen when they say WAIT AND SEE, what are they waiting for?

Everything they say is so vague.

They can say no MS but I am not sure if they can actually CONFIRM no MS when they cant confirm MS in the first place if you get my gist LOL.

My friend was told NO MS about 10 years ago after her suffering from MS symptoms for about 10 years, then recently in the last 5 years her MRI showed MS, so you can never tell what might come up.

NOT that I hasten to add I want you to have MS.

I think you need to discuss where now when you see him next.

Its nearly bed time for me 4.30 and I feel rotten had a bad night with nightmares and in lot of pain today as well. ~Ah well whats new LOL.

~Big hugs Maria (Have you heard from Stormy?)
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that is a good question, maria--where is theresa?
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Thanks Maria,

I have not heard from Stormy eaither..have not seen her around..last I heard was of her LP and starting to feel badly..hope she is okay...

Yah now..I agree wait and see for what...I flunked at this appointment...didn't ask any questions...I was not as prepared as my last one.....(idiot)

The no MS was because he saw no NEW lesions on MRI which can not give me a dx of MS at this time..Beleive me I am not wishing for this to be..the wait and see part leads me to beleive wait and see what happens until perhaps I need I need another MRI...or I get worse symptoms ????I don't know


This is what I don't get and what MAY be a little confusing for me...It is apparent that I have had similar symptoms in the past years (numbness and tingling) and have had MRI's for them..yes I have migraines I do not deny BUT symptoms were never associated with them..I have had increasing lesions as well throughout the years as shown on MRI's and also indicates demyelination....so....can you really say that because I don't have any NEW lesions at this exact point in time...even though past MRI's were suggestive of MS that it is NO MS? OR is what I have been experiencing the last 6 mnths my first apparent symptoms and he needs more to confirm??? (See here I go aagain questioning things) I really need to stop this.....

My next appointment is going to be to stop my migraine meds...in the meantime I am going to try and focus on just logging on all my symptoms and trusting hiim he is right on this....AND maake a list of questions that I did not ask the last time.....

I hope you feel better Maria - big hugs right back at ya!!!!

Thank you all for listening to me babble on ........Binx how are you getting aong?

Jibby Jen
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hi jibby jen (i like that!)~

thanks for inquiring about me.  i am just treading water here having my good days and bad days, waiting for my new medication to show signs that it's helping.  i also have a neurologist appointment on monday, so we'll see what he says about the rheumie's theory and approach.  i'd like to think the docs communicate with each other, but from what i have experienced, that is not generally the case.

you know, i don't think your questioning things is a bad thing at all.  like you said, it would be good to have your thoughts all written down so that when you see your neuro next time, you can get some answers.  someone has to be thinking about this stuff!  and if it isn't the doctor, it might as well be you.

hope you're having a good day, jenny.

best wishes,
binx
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Hi Binx,

I wish you well on Monday with your appointment... I have to admit I am a little jealous that you have more doc's working with you.....than me....does it seem to have more benefits having more opinions or more confusing? I do wish you well...I know what you mean about good and bad days all to much...Are you able to continue working? (I must go back and read your posts forgive me) Are they suspecting any particular dx. for you?

Thanks for understanding my "weirdness" I am making a list ..a running list.. as we speak (type)..

I am sorry to say I had a crappy day with my hand...my tingling has turned to prickling pain in my hand and it is cold as ice and still some odd sensation in leg ...but tomorrow is Friday..Thank God!!!


Be Well!
Jibby Jen (kinda catchy)
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hello again, jibby jen,

i hope your friday went a little better for you and that you get some good relaxation time this weekend.  i get the same prickly cold feelings in my hands and feet, primarily on my left side, and it is really troubling sometimes.  i haven't had the pain you describe though.  is there anything that gives you relief, or do you just have to wait it out?  

i am not able to work, nor have i been for the past year which has been pretty devastating to my little family and is the source of much stress which is something i have been advised to avoid at all costs.  as far as a diagnosis goes, my rheumatologist and neuro-ophthalmologist both said that since my thyroid isn't to blame, MS & lupus have been taken off the table, and every single blood test they run has come back normal, i am probably dealing with an autoimmune process triggered by a viral or bacterial infection that has affected my central nervous system and is also causing small vessel vascular inflammation in my optic nerves.  we'll see how they proceed now that the last batch of blood tests my rheumie ran further indicates that i am in *perfect health* on paper.  i am guessing the next step will be to start looking for this mystery virus or bacteria, but who knows?

as far as the multiple docs are concerned, i guess it has its pluses and minuses.  the neuro-ophthalmologist has been talking with both the rheumie and the neuro, but the latter two haven't communicated yet which i think is too bad.  i have to fill one in on what the other is advising and it's hard enough for me to keep track of stuff on my own, let alone communicate it in a digestible form to them.  

this is just a thought, but perhaps if your neurologist ultimately comes up empty for you, maybe you ought to consult with a rheumatologist since some autoimmune functions can cause neuro-type symptoms?  you have some phenomenal medical schools/teaching hospitals in MA and the rest of new england that might be a good resources for you.  (i was born near springfield and am a new englander for life.  go patriots!)

i hope you have a really nice weekend.

take good care,
binx
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Hi binx,

Any Friday is a good Friday..but Thanks my day was good. I am so sorry to hear that you are unable to work..I wish docs could get on the same page...i wish i could get on the same page as my doc....

We do have alot of good medical facilities here..I think this is my next move depending on outcome of next appt. in 2 months....it's awesome you are a New Englander at heart! Love the Pats too..but they really fouled it up this year!!!! oh well next year.. i have my TV back now...hehehhe My husband has season tickets for the Pats and I love when he goes to games because it is my quiet time to watch a movie or relax alone...

Well binx...have a great weekend..be well ...

the fight goes on..and on......................and on

Bye for now
JibJen
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Hi all

..yes, absolutely, whatever is this 'waiting and seeing' about?

There comes a point when you just have to draw a line under waiting and get on with actively pursuing diagnoses.

I sometimes wonder how one would be treated with the same sx if one were The Queen or Michelle Obama...honest Q here: would the docs REALLY send them away telling them to 'wait and see'- apparently endlessly?

I don't think so. So what is the difference? Money? Power? Fear (on the part of the docs)?

The ridiculous thing is that a swift blast of proper tests at the beginning of an obviously debilitating illness would quickly rule out a load of conditions and even find the cause. Instead they seem to automatically jump to 'conversion disorder' and let the disease rumble on and on with all the horrible exponential effects that causes. Like, for example,  binx mentions not being able to work for a year....that's dreadful, a real waste of skills and talent and puts family economics at risk, thus creating yet more problems in other areas...it becomes a vicious circle.

Then, the longer it goes on, the less and less able one is to get back to any sort of work.

I soon lost my practice - a thriving business employing several people. I'd built that from scratch during my 30s and 40s. I'm so out of touch now that I would have to go back to studying to get up to date professional knowledge and renew quals. It's not going to happen now given my age, level of disability and relative poverty.

So...what do I do? Turn up at the gvt job centre telling them that I want a job but 'oh! hang on a minute...I can't sit at a desk for more than 20mins because of my neck and I keep keeling over...!' They'd ask me straightaway for a medical certificate. And I'd have to say that there's been no medical diagnosis that explains this disability for 5yrs....result: more hassle with yet another care-less branch of gvt.

British Limbolanders will know exactly what I mean about the abysmal bureaucratic impact of not having a formal label (and treatment) and the almighty piece of official paper from The Doctor. It affects your whole life - because then you get drawn into exasperating and exhausting battles with callous gvt penpushers...and worse.

Do doctors - including neurologists - have no idea at all about their role in the chronic degradation of our lives?

Sorry...went off on a ramble there. Don't mean to hijack your thread Jibby!

But it's a bit of an illustration in practical terms of just some of the things this 'wait and see' nonsense does.

Over pizza (mmmmm....PIZZZAAAA!) tonight, my son, D-I-L and I were talking about exactly this: the possibility that the neuro on 3rd Feb is going to carry on down that line. Son says that if neuro starts on that route he'll barricade us in the office and not let the &$^&%£ out until there is a definitive dx, appts for MRIs and MRAs and a proper treatment plan!

After 5+yrs, it gets you that angry. I always used to wonder about all the signs we have in doctors' surgeries and hospitals deterring violence from patients. Now I know why.

Violence is never acceptable - but then, nor is care-less or 'benign' negligence just because they can and we're relatively powerless and, worse, ill/in pain/suffering.

There's my tuppence-worth, for what it's worth! ;-)

I hope everyone's having a good weekend - or as good as possible...

hugs all
samxx







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No problem silkcut - I love your energy..I need to be pumped up!!! I have an appointment in 2 months...I'll let you know when it gets close and you can give me a pep talk !!!

I would love to be the one to tell my doc well let's "wait and see"....no problem for them to wait and see....is it while patients have to struggle..ugghhh

Have a good one!

JibJen
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It is not only the British that need that elusive piece of doctor document. Here in the US it is also required as proof of disability or you get shoveled under the carpet to fend for yourself. In the years that have gone by since the symptoms began I have not been able to get one doc to pin this down. Most have told me it's depression, anxiety, all in my head but they won't write that down either because it would give a NAME to my illness. Not a one of them is willing to put their signature to anything because they might just be wrong. So, where does this leave me? Here, in LimboLand.

By the way, the mental health people, who I went to see because I was starting to believe the doctors, do not feel I am anything but depressed by the very real physical symptoms I have. Doctors say it's all in my head, the psychiatrist says it's physical. What is a person to do with that?

Sorry, I get a bit angry thinking on this topic. Please forgive the rant.
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dear inPain4evr,

i'm completely there with you on this one, having been denied social security and awaiting reconsideration as i type this.  without a diagnosis from a doc that fits into their disability scheme, we're pretty much hosed.  it angers me beyond words.  well, at least beyond words i can use on this forum that won't get converted into *****.

i, too, have been told by my counselor--a former RN who specializes in helping people deal with chronic illness--that any depression i am experiencing at this point is purely situational.  if i were well, i wouldn't be depressed.  it's not even a chicken and the egg question--without the illness, i'd be skipping down the street, hand-in-hand with my family, gainfully employed, with my biggest concern being what to make for dinner.  i have glimpses of what it would be like sometimes, but the tunnel now seems darker and more endless than ever to me right now.  i'm having a pretty hard time as of late.

waaah.  whine. whine. whine.
binx
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Oh gawd, binx and inPain4evr, you sum it up exactly and so well.

So you also have a social security system that requires endless certification from 'professionals'. These SS 'people' can be completely obnoxious. You'd think they didn't have families and friends who suffer life's slings and arrows too....(oh, hang on - maybe they don't...maybe they haul themselves out of boxes every morning like daylight zero-brained zombies...)

ME TOO! re the mental health thing. I've had assessments of post-traumatic stress disorder and severe depression from MH professionals yet cannot get any treatment because it seems a) all the awfulness is real, it's not in my head (that's situational isn't it?) and b) if they treat me for MH probs then it could be tantamount to admitting guilt. Oh yes, there's a c) that's also barely articulated...I'm too smart to be so depressed and traumatised, I have the intellectual wherewithal to get on with it myself. NOT.

And Jibs...I can sadly assure you that all that energy is entirely mental! I am physically catatonic most of the time - the typical sloth of the depressed and dejected...On the one hand,i reckon I'd be dead by now if I hadn't been able to think through and contextualise the abuses I've been subject to. On the other, I just don't want to know the vast majority IRL anymore - at least, I don't have any interest in those who consider themselves to be 'normal humans'.

But yep, we can do all the prepping and pepping you want!! In fact, maybe we could develop a kind of generic prep formula. You know, a list of all the Qs you need to ask and a list of helpful advice and support from our limboland friends....;-)

I'm absolutely terrified of going to see this next neuro. I know I need loads of encouragement there - and confidence building (which they've systematically crushed over these past 5yrs). I can't bear the thought of yet another doc drossing me. My son tried to assure me that 'It'll be different now, now we have the xray physical evidence...'

*snort!!* Bless! He's such an innocent, isn't he?! I asked him if he knew how much clinical evidence, signs and symptoms doctors have already ignored and worse, turned it into 'anxiety'...

THIS is what terrifies me, and not without material reason: the chap a few doors down was avoidably killed by our former GP's refusal to give him simple tests at the right time, was sent away with indigestion tabs for 'stress'. A young mum had to have a colostomy and now a bag because the very same GP refused to go and see her after her husband kept reporting post-Csection agony. Another older lady was within an hour of losing her leg due to neglected necrosis. Neglected by? Yep, you guessed. This guy is apparently known as the neighbourhood's Dr Shipman... (Dr Shipman was a rogue GP in the north of England who, over many years, surreptitiously bumped off hundreds of his elderly patients. His murders weren't discovered for years because the culture here is that doctors can do no wrong; patients are ignorant troublemakers...)

So that's partly why I am so frightened. I guess I use that fear sometimes to get mentally energised or angry. Which brings me to all this apologising we do about ranting and groaning...hey, I'm fine with it all! Please never feel that I need an apology - blimey, the things that most limbolanders have been and are going through are truly the stuff of nightmares...if you can't rant and whine here, where you can you...;-)

(Plus, I've survived ...The Teenage Years...*gulp* )

hugs to all
samxx


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To: all of the above:

this world of limboland and dealing with the medical proffessionals (or so they think they are)  is unbeleivable...

Jib
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This thread seems to have grown a dirrection of it's own, some interesting comments in here. I read something in here that I thought WOW    I gotta comment on that..... and I forget what it was I was going to say.  Sorry.   Maybe I'll read through again and it'll come back to me.

Must not have been that important I guess

            Mike
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Hi Mike,

I know hasn't it... Please share when you remember I saw you got some more results back...Were the results what you expecting them to be? another piece to the puzzle...I do not think anything is ever what we expect it to be is it??? ..

Have a  good day.

Jib Jen (I like JJ..easier)
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*passing around a plate of cheese to go with all the whine*
:)
I retained a SS attny to assist me with the disability process. Seems she isn't doing any better than I did. It's almost a year and who knows how many reams of paper, from endless dr visits, and I still can't get a date to talk to them. Frustrating.
Binx
I think the **** in the posts make it kind of artsy .. LOL .. keep a flash light handy so that tunnel never gets too dark. My psych told me I have to be more upbeat about my situation *grimace* (she had a bad thing happen to her and still has feelings of resentment that SHE doesn't recognise)
SilkySam
I love how you refer to them as "SS people". The title fits them well. The "SS" (hitlers police) were known to be quite nasty and devoid of humanity in any form. Hold your head high during this next neuro visit and ask a million Qs. If they can't be answered to your satisfaction or if you are disregarded find yet another.  Maybe this is the one where you will be believed and helped. I hope so. I can't see how so many doctors, across continents, can toss out the high anxiety or depression card so easily except that so many of them don't give a darn, really have no clue or both. In which case they should NOT have become doctors in the first place. It IS terrifying to think we have to entrust these careless, thoughtless and feelingless individuals with our very lives. Have faith somewhere out there, there is someone who became a doctor to HELP people. I keep telling myself this. I also keep telling myself I AM going to win the lottery .. LOL
Mike
Your comment is important and eventually it'll float back to you. No worries. I think the brain fog that most of us don't enjoy robbed you of your moment. You ever start talking to someone and in the  middle of a sentence forget what word you were trying to say and then forgot the entire reason you were talking to that person? Or you think you're saying something intelligent and gibberish comes out? Fun times...
jibjen, jibs, jibyjen, jj, etc :)
I know the feeling of "almost" knowing what I might be possibly going thru only to have the perverbial rug yanked out from under me. Horrible feeling. I was told by 3 completely unrelated drs that cauda equina was suspect because of gait disturbances and bowel/bladder issues and low back pain. But, nope, yanked that rug right out. Not that I WANTED cauda equina!!! I just want what everyone else wants- to know what the heck is going on.
Silky said we were on a merry-go-round that wasn't merry. How bout we call it the Terror-Go-Round?
Anyone care for some more cheese?
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Hi,

Nobody wants anything horible to be wrong with them of course but when you are being told 10 different things and being talked to in circles and end up no better than when you pressed the big green "go" button on this crazy ride it is exhausting and frustrating.

I think the worst is to know something IS wrong, not always being able to describe your symptoms and waiting and waiting for tests results only for them to come back negative or in some cases somewhat abnormal and still being told your fine or it's only this.......

UGGHHHH

Good cheese ;o)


JJ,JibJib,Jibby Jen
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Hi All,
Well it seems this has turned into a Whine fest.So I will bring in my bottle of Pinot Noir to the party..LOL
In the beginning of my neurological chaos I was told I was anorexic and suffering from panic attacks..I was also told that my brain mri was normal too...So that means that there is nothing wrong with me . Here I am over a year into this $hit and about 6 doctors later and still know nothing. But I am better off than I was because I found a  true rarity a neuro who listens...She actually listened and took notes. She ordered new tests. She told me that yes there is somthing really wrong with me but she was not sure what. She is willing to take the time and put in the effort to find out. So there is hope ! I know it ***** and I know how D@mn scary it is. But I have learned that being negative and sitting on the pitty pot does not help the situation.I have a flare and remit type pattern but I have some degree of neurological weirdness at all times. It is always with me. But I am not about to let whatever the hell this is kick my A$$ and win!Things may not seem like they are ever going to get better. But things can get easier to deal with.
Please Take Care, Theresa
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Give the lady a plate of Brie!
LOL
Funny how ill we are yet so completely normal. Must be all in our head, at a microscopic level maybe. How wonderful that you've found a real doctor! You are SO d@nm right about how it ***** that we know something is wrong yet they don't give $hit. (doesn't that look artsy? LOL .. I'm too easily entertained) I have the flares too and boy does my butt go numb when I sit on that pitty pot too long. Time to get off.
Tell it like it is StormyTheresa!
I know this has gone way off the original posting but it has made me smile.
Thanks
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